The latest paper by the UK Psychiatrists whose
focus of study is Chronic Fatigue Syndrome (CFS), demonstrates some quite
incredible psychology. It begins with the assumption that Cognitive Behavioural
Therapy (CBT) or Graded Exercise Therapy (GET) when added to specialist medical
care improves physical function. And the purpose of the paper was to examine
the ´mechanisms´ involved. They concluded ..

´Our main finding was that fear
avoidance beliefs were the strongest mediator for both CBT and GET. Changes in
both beliefs and behaviour mediated the effects of both CBT and GET, but more
so for GET. The results support a treatment model in which both beliefs and
behaviour play a part in perpetuating fatigue and disability in chronic fatigue
syndrome.´

So, what is the meaning of this? In words that most
would understand, this means that if you are a CFS patient and you want to get
benefit out of the only government-approved CFS treatments, you need to get
over your fear that these treatments will lead to a deterioration in your
health. More fundamentally, this means that to overcome your mental block
(which prevents you from getting better), you need to dispel any mistrust in the
psychiatrists and their science, because they know better than you what is best
for you. And no mention of enterovirus, Epstein-Barr virus, Parvovirus B19,
exposure to organophosphate pesticides, vaccination, immune dysfunction, etc.
How simple it could be if patients would just give their complete trust in the
absence of supportive evidence.

In response we might feel frustrated by the almost
unbelievable disregard for the reality of the biological disease in question, but,
in my opinion, it is better to first understand why we may have found ourselves
in this situation.

CFS is unique in that there are no reliable and
verifiable findings on standard clinical examination. And, so people could theoretically
lie about whether they suffer the symptoms of it or not. It seems to me that
the basis of this whole situation may be that powerful employers do not want to
risk the situation of having to pay sickness compensation based on non-verifiable
symptoms as stated by individual patients. And, if CFS becomes accepted as a
biological disease, CFS patients and anyone wishing to receive sickness
compensation, would have the power to receive it anytime they might wish. And
so, such powerful employers may have donated money for ´research´, which may
then have been awarded for psychological research with the purpose of
´discovering´ the psychological pathogenesis of CFS itself, and (as in this
latest paper), to explain the psychological reasons for non-response to the psychological
treatments. Therefore, the problem has most likely been solved for such
powerful employers, as we know that psychiatric diagnoses are not covered by
sickness compensation schemes, and there is a body of psychiatric research on
CFS going back decades, which is regularly used by some to demonstrate that CFS
is a psychological disease.

If the above is true, is this the reason there are
two camps regarding beliefs on the pathogenesis of CFS, with little trust
between them? Why do the two research camps not trust each other? I suppose
that the psychiatrists might say that such lack of trust indicates psychological
problems in the mistrustful individual, but to me, that would depend on the
context, and there seems little wrong with the intuition of most CFS patients
who do not trust in CBT and GET. There are no other diseases, to my knowledge,
where we see two such totally divided camps which differ on their beliefs about
not only the cause of a disease, but also the lack of response to treatments
offered by one side only.

Just in case this statement is misunderstood. I do
not believe that CFS patients tell lies about their disease, and I do believe
that CFS is a real disease with a biological pathogenesis, that is triggered by
virus infection resulting in chronic immune activation and a long-term flu-like
illness with disastrous consequences for patients. I believe that CFS results in
real and sometimes severe disability which may be life long. I do not believe
that CBT and GET are valid treatments for CFS, and I do not believe that patients´
fear avoidance behaviour is the reason that CBT and GET do not perform
optimally in those patients that it does not help.

Wednesday, 11 February 2015

So when I first saw the name "Systemic Exertion Intolerance Disease" I was relieved: At least the word "fatigue" was gone! No more "Chronic Fatigue Syndrome" slurs for us, I thought.

Acknowledgement at last?

The term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness.

The word "disease" in there pleased me in those first moments too, and the fact that the disease is recognised as "systemic" - that's got to be good too? Right? Finally add in the fact that the name describes patients' intolerance of exertion, and you'd think I'd be totally won over by the name....

But I'm not!

SEID - Systemic Exertion Intolerance Disease - still sounds a clumsy, descriptive and not a really serious name. It doesn't portray any of the seriousness of the very severe end of the spectrum, and implies that if we just avoid exertion then we will all be fine and dandy.

Would folk with Diabetes be delighted with "Systemic Sugar Intolerance Disease"?
I doubt it.

The first thing I wanted to see was how the IOM proposed to diagnose the disease. And again, at first glance this makes a lot of sense.

Click on any image to make larger

Yet, for me, I was a little uncertain about the "unrefreshing sleep" compulsory criterion. At the time I was diagnosed my sleep was okay. It is less good now, because I tend to wake much earlier than I want. So am I refreshed? Well I'm better than if I'd stayed up all night, but I'm still "ill".... does that count as "unrefreshing sleep"?

Then the question of what is meant by "Post Exertional Malaise". If I exert myself I my body has two responses: one at the time, when my heart races, and I quickly run out of steam; and the other two days later when I feel like I am drunk, have flu and a migraine all at once!

This descriptor doesn't seem to insist that the patient has a delayed response, similar to the type revealed by the 2 day CPET test. So could a patient, with symptom exacerbation just at the time of exertion or in the few hours directly after exertion, qualify as having PEM for the purposes of this diagnosis?

And if so, is that description true to what many experts feel is the central issue of Myalgic Encephalomyelitis?

And why again was the perfectly adequate name of Myalgic Encephalomyelitis, recognised by WHO since 1969, dropped?

Much debate has been stirred up within the ME community, and already Dr Enlander has spoken up to state his concerns:

And the media? Well they just think, new name for old condition.... so they look up all the old CFS material and tell the populance that Cognitive Behaviour and Graded Exercise Therapies are known to help. I sure hope that some-one in authority will consider putting the press right on that issue fairly quickly.

Sadly, when a question about GET was asked at the presentation of this report, the committee evaded answering and said that treatment recommendations were outside of their remit. Ho hum!

So, looking on the bright side, what might be good about this report?

Well one good thing I can see, is if this report brings in its wake a huge dose of funding for real biomedical research!

As for the new name? Well, now that I've thought about it overnight, I realise that it is not a name I will ever voluntarily use to describe the disease that afflicts me.

Monday, 9 February 2015

There is a tangible feeling in Northern Ireland, that change is in the air for the treatment of ME and Fibromyalgia!

The Patient and Client Council (PCC) has recently delivered invitations, to an ME and Fibromyalgia Symposium, to medical professionals and MLAs in Northern Ireland.

To ensure a good attendance at this event, patient groups are now united behind a move to write personal letters to GPs and MLAs encouraging them to attend. A template letter for download can be found at this link.

The Symposium speakers include:

Dr William Weir FRCP, from London

Dr Pamela Bell, of the Pain Alliance NI.

A video link to a UK researcher and another specialist clinician (names to be confirmed)

Several patients, who will talk about how ME and/or Fibromyalgia impact on their lives.

Currently there are no Specialist ME services in Northern Ireland, and services for Fibromyalgia seem inconsistently offered. It is hoped that this meeting will help to raise the profile of these two diseases and also highlight the need for a radically new approach.

Replies to the invitation are due on Tuesday 17th February, so THIS WEEK is THE WEEK to make a difference. If you are in Northern Ireland, please support the efforts of the charities:

ME Support Northern Ireland,

FMS/ME Awareness NI,

Fibromyalgia Support Northern Ireland, and

Newry and Mourne ME Fibromyalgia Support Group

You can download, and personalise a template for promoting this event here.

Some patients are also personalising the letters with a hand-written cover note. I intend to add a short note about my illness - probably something like this:

I became ill with ME on 1st March 2012. Having previously led a very active life including: mountain walking, riding horses, and keeping a large organic garden. I am now very disabled, restricted to using a mobility scooter, and sadly I have also lost my teaching career.

There is no specialist consultant led clinic in N.Ireland to which I can be referred, and many doctors are still working from outdated guidelines about the nature of the illness.Please help by supporting this event.

Please, if you are at all able, help us to ensure that this event is really well attended.

We need to make our voices are heard.
PS This is not a patient event. However representatives from the charities (mostly patients) and the patient speakers will be in attendance.